A regular commentary on issues related to ADHD from the CEO and other leaders of CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder).

Tuesday, August 9, 2011

CHADD's NRC Needs You!

by Mary Durheim

To all my friends and colleagues in the world of disability—this is a National Call for Action!

Those of you who know me know that I do not Tweet, seldom correspond via Facebook, avoid blogs, and never participate in chat rooms. The mere fact that I am writing this blog posting is a sure sign that we who are touched by disability—either as a person with a disability, or as that person’s parent(s), sibling(s), relative(s) or friend(s)—are facing something important.

I’m writing to tell you of a national challenge with potentially devastating consequences for millions of Americans with physical and mental disabilities. I’m writing to ask for your help!

I write specifically on behalf of CHADD’s National Resource Center on ADHD (NRC), but this issue directly impacts millions of people with disabilities and the organizations that are usually the only voice for individuals and families like ours.

For Fiscal Year 2012, the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) is planning to eliminate specific funding for programs that support people with disabilities such as ADHD, spina bifida, muscular dystrophy, limb loss, and paralysis.

Instead of sharing the burden of decreased funding among all of the disability programs it currently supports, government bureaucrats have decided to play a game of winners and losers. In this game, some programs or conditions will continue to be funded at current or even higher (!) levels, while others will simply not be funded at all.

Does that seem fair? Does that seem right? If there’s not enough stew in the dinner pot, is any mother going to feed two children their full portion and tell the third child, “There’s none for you”? Of course not! Everyone should still have a place at the table and the burden of less should be shared by all!

Instead of sharing the burden in these tough economic times, the bureaucrats call their plan “consolidation.” But to us, it looks more like “elimination.” Over the past few months, a coalition of disability organizations has met numerous times with CDC officials to learn more about what this “consolidation” means. Like many of their colleagues, CHADD representatives came away from these meetings wondering where ADHD fits in.

NCBDDD and ADHD

Established by an Act of Congress in 2000 (P.L. 106-310), the NCBDDD impacts the health of millions of our nation’s most vulnerable citizens: infants and children, people with blood disorder, and people with disabilities. NCBDDD is the only CDC center whose mission focuses on these populations. (In FY2010, NCBDDD was funded at $143.6 million and at $136.1 million in FY 2011, a decrease of 5.25%, while the National Resource Center on ADHD had a decrease in funding of 7.16% during the same period).

Consolidation of programs or elimination of the NCBDDD disability division would be disastrous.

For families dealing with ADHD, these changes would continue to seriously jeopardize the funding base that supports CHADD’s National Resource Center on ADHD (NRC). Think back to when you, your child, or family member was first diagnosed. Where did you go to find reliable information? Where will you go in the future to stay up to date with the most current research and appropriate interventions?

I still painfully remember when my son received his diagnosis, including but not limited to ADHD. I was scared, had little to no information, and had no one to talk to. Don’t you remember the day you received the “diagnosis”? Yes, there’s a lot of information online, but not all of it is reliable or unbiased.

In addition to providing only science-based information, the NRC is the only resource center that has trained specialists that people can actually talk with. Elimination of public funding for the NRC would essentially destroy much of the progress that has been made over the past ten years.

NCBDDD and NRC Successes

It is currently estimated that one in 33 babies in the United States is born with a birth defect and approximately 13% of children have a developmental disability. The NCBDDD funds surveillance, research and prevention activities aimed at helping us track, understand, and ultimately prevent these disorders. The success of NCBDDD programs has contributed to a 26-36% decline in neural tube defects, as well as significant advances in the identification of preventable risk factors for birth defects and improved screenings.

As for ADHD, since the NRC opened its doors in 2003, trained health information specialists have responded to over 27,000 individuals seeking information, guidance, or sometimes just a listening ear. And then there are the millions of visits to the NRC web site; the special projects reaching out to African Americans and Spanish speaking persons; the monthly Ask the Expert chats; the newsletters; the information sheets… the list goes on!

Business in Washington, DC, is and always has been centered on party politics. My call for action to maintain the current structure and funding of the NCBDDD, its disability divisions, and especially funding for the NRC, has nothing to do with whether we are Republicans, Democrats, Independents, or however we may classify ourselves. It has everything to do with the lives of our children, our friends, ourselves. It is about our future and those who will be born in the future and the quality of life future generations of people with ADHD or other disabilities will have.

We urge you to become involved and let your voices be heard. Help us to save not only the National Resource Center on ADHD but also the NCBDDD disability division.

Yes, these times are tough. But certainly no one—not the President, not Republicans or Democrats nor leaders in either the House or the Senate—wants to be known as the ones who undid a decade of work done through CDC that positively impacted the lives of people with ADHD and other disabilities.

How You Can Help

In the coming days, while Congress is in recess and our senators and representatives are in their home states and districts, we will be asking you to contact these elected officials and let your voice be heard. CHADD will provide you with the facts on the accomplishments of the NRC and NCBDDD.

We will post sample letters for you to assist in communicating with your representatives. We will give you tips on how to tell your story—because nothing has an impact like the power of a personal story! We will ask you to make sure that your elected officials know how important it was—and is—to have access to solid, science-based information that has the ability to change lives and help people with ADHD reach their full potential.

Congress must hear these stories—by the thousands—if we are to continue to make progress.

Thank you… and stay tuned!

Mary Durheim

Mary Durheim is a past president of CHADD and one of the founders of CHADD’s Parent to Parent program. An educational consultant, she is active in numerous county and state interagency organizations as a trained mediator, Section 504 hearing officer, and behavior strategist. Durheim is the mother of two adult children with ADHD.

11 comments:

Anonymous
said...

This is terrific, and I will be happy to take action. With future posts, you might consider including a link to an online letter or petition that CHADD/NRC forwards to decisionmakers on our behalf. It's common online advocacy practice.

I work in professional development at a county level. No doubt our biggest parent training draw comes from the topic of AD/HD. As a parent of 2 children now with ADD and ADHD respectively, I rely upon CHADD NRC to help me and to help every parent that I am asked to help. It seems that our politicians took a "little off the top" from both ends of the spectrum - one of the most populous diagnoses and one from the other end with the smallest percentage of representation with paralysis and other neurological/physical disabilities. With cuts looming locally to our departments of welfare and health, where do our families get help - particularly when NRC has provided information that parents had to use "on their own" to help their kids?

Dear Mary, RuthI am left unclear, in you article how CHADD ....the NRC and the rest of the organization are funded in total. Also, I have written, petitioned, contacted my NYS legislators a dozen or so times in the past 3 years and even offered an explanation of these efforts at our CHADD Convention last Nov 2010, this was regarding annual multimillion dollar shortfalls in IDEA funding. Therefore all you describe sounds much the same. I do not favor "the playing nice in the sandbox lobbying-meeting approach" with elected officials any longer....I believe the Fed Government itself and Congress, etc. should be sued, for failing to fund the programs they they have legislated into existence and CHADD and other similar organizations should participate in funding such class action lawsuits.Eric Haracz MSChapter CoordinatorCHADD of Suffolk County, NY

I am a parent of two children who have AD/HD. I am also a self-contained teacher who works with many children who have AD/HD, autism, learning disabilities, ODD, etc. I absolutely love what I do. As you already know, over the years, Autism Speaks and other companies have done a fantastic job making people aware of autism. They have also gotten many companies and actors to spread the word about autism, which has helped many understand autism. The have raised an enormous amount of money.

I think that now would be a good time to let our voices be heard.

Let's spread the word about AD/HD on a greater scale! When my child tantrums and/or jumps up and down because he can't wait for something, people look at him like he is crazy or like he is a spoiled brat. We need to make people more aware about AD/HD. We need to show them how important our children are and stop the cuts.

Why can't we follow in the footsteps of Autism Speaks? Ribbons for AD/HD? Bracelets? Media awareness? Actors with AD/HD should speak up too!

I agree there needs to be more awareness of ADHD and what children and families deal with. A lack of resources would hinder family's ability to successfully cope with the day to day struggles. We will contact our representative.

I was at a loss at what to do with my son's behavioral issues but this helped almost immediately and the results have been consistent. I really appreciate these techniques so muchhttp://reneemill.com/products/?e=SHTLZRQMU5JWJ

As a CHADD member for the past year, I have been, unfortunately, unimpressed with the NRC. I would be fully supportive of your efforts if I felt that the organization were doing more and doing more effectively than it has been. I cannot speak for the other organizations that might also be involved, but if the agencies were combined maybe improvements could be made through sharing of costs, efforts, and resources. Right now, I do not feel as though CHADD or the NRC adequately provide necessary resources to parents struggling with ADHD. I don't see improvements to the way education addresses ADHD. Most of the best information I have gained about working with a child with ADHD comes from organizations unaffiliated with the government or organizations the deal with parallel issues. And trust me, I am not some Tea Partier looking for ways to cut; rather, I am a card-carrying liberal, but I still like money to be well spent.

About Me

Ruth Hughes, PhD, is the former CEO of CHADD. A clinical psychologist by training, she has an adult son with ADHD who is thriving. A former member of CHADD’s national board of directors, she served as both Deputy CEO and Chief Program Officer before becoming CEO, and now serves as a special advisor.